Rare Disease Day is a national and international event designed to impart the general public, and decision makers, with awareness of the impact of living with a rare disease. Initiated by EURORDIS (Rare Diseases Europe) and it’s Council of National Alliances in 2008, this worldwide campaign has created a far reaching energy and impact.
The U.S. defines a disease or disorder as “rare” when it affects fewer than 200,000 Americans at any given time.
• 80% of rare diseases have identified genetic origins while others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
• 50% of rare diseases touch children.
The characteristics of rare diseases are diverse, and vary across distinct diseases and individuals. There are 6,000-8,000 rare diseases; affecting quality of life in ways such as loss of autonomy, chronic, progressive, and degenerative pain, and other life-threatening symptoms. Many suffering with rare diseases endure high levels of pain and discomfort. Regrettably, there is a lack of scientific understanding and knowledge surrounding these types of illnesses, which can lead to delays in diagnosis or even misdiagnosis. There are no existing effective cures for rare diseases.
On February 28, 2013 we observe the sixth international Rare Disease Day, coordinated by EURORDIS and organized with rare disease national alliances in 24 European countries. Awareness raising activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the U.S. and Canada, and as far as Australia and New Zealand!
In order to continue developments and gains with our understanding of rare diseases, we must persist with scientific research, as well as the sharing of scientific knowledge about all rare diseases.
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Many of our clients suffer from various types of rare diseases, requesting our services when their long term disability claim has been denied. At Kantor & Kantor, we understand that being denied disability coverage by your insurance company or employer only exacerbates an already difficult situation. We work tirelessly to advocate for the rights of our clients, and we proudly support 2013 Rare Disease Day.